Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

Share on facebook
Share on twitter
Share on email

A Fundamental Right Quashed

Carol has been well for 25 years, but the memories of her time with ME/CFS were still fresh. She’d just graduated from graduate school when she, like so many others, got a flu that never lifted. It was years before Carol recovered – years during which she was able to experience the full weight of the medical community’s rejection.
As she talked, it was clear that it wasn’t just the debilitation, although at one point it was extreme (taking a shower was all she could muster for the day) or even the pain that she experienced, that really got to her. It was the rejection by the medical community.
Many men and women with ME/CFS, of course, experience medical rejection, but for women, particularly professional women with careers like Carol, there’s probably an extra bite to it. To have worked that hard and then not to be believed when you’re really hurting; that clearly cut deep for Carol.
In her Fall 2016 President’s letter Carol referred to  not just the pain of the disease or the diminished lives it brings but “the barely veiled disdain from those who question whether we are really sick”.
It was as if she felt that a fundamental right – the right to be believed and taken seriously – had been squashed.  I got the idea that ME/CFS is more than a medical problem for her; it’s also, given how she and others have been treated, a women’s issue.  When she saw the job opening at the SMCI she said she had to have it….
Read the entire article here: https://www.healthrising.org/blog/2017/05/02/passionate-pragmatist-carol-head-fight-mecfs-equality-smci-pt/

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

1 thought on “Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I”

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top